New Member: EBMD

[liz56]

Hi,

Thanks to Rebecca for creating a well-rounded environment for helping people with a range of eye problems.

I was referred to Rebecca by a kind doctor, whom I cold called and who referred me here for more help. I have a good and caring ophthalmologist and a hurried cornea specialist, but I just learned today, after about eight weeks of pain and confusion, that I have Epithelial Basement Membrane Dystrophy. So, I am looking for information that can help me.

I am a teacher, so I read a LOT, and my eyes are important to me, and so is my sleep. Both are suffering right now, and I hope that my problem can be managed.

If anyone here can offer advice, I will be happy to listen.

Thanks, and it is nice to meet all of you.

[ziggy]

ebmd...

Liz...I have pretty much the same thing...It helps to use Muro128 at night..I use the generic version by Akorn...found that much easier to use..after a week it helped both the pain and sleep issue...I also have plugs...Loads of info on this site..Much of it has assisted me in dealing with various eye issues...Simple things like a humdifier and eye goggles all help...Hope something will work for you...The trick is to keep trying!!!!!

[Lucy]

I also have this condition. Please be aware that if you have EBMD, you should not have lasik surgery. My doc told me to use Muro 128 ointment for EBMD. Please be aware if you have EBMD, you should not have lasik surgery.
Lucy

[liz56]

Thanks

Liz...I have pretty much the same thing...It helps to use Muro128 at night..I use the generic version by Akorn...found that much easier to use..after a week it helped both the pain and sleep issue...I also have plugs...Loads of info on this site..Much of it has assisted me in dealing with various eye issues...Simple things like a humdifier and eye goggles all help...Hope something will work for you...The trick is to keep trying!!!!!

Thanks for the encouragement, ziggy and Lucy. When I was first discovering what was happening to me, the doctors put me on muro 128 5% ointment at night. However, after two weeks, once the cornea healed up (at least on the top layer and did not take dye any longer), they took me off of it at night (though kept me on the drops during the day). The nighttime erosions stopped right after that. Have either of you ever heard of that happening? I have been waking up every three hours and putting in Genteal Gel. It feels great and seems to be helping. Not sleeping as much as I should is helping, too, though I know that is bad for me in so many ways.

Thanks, again, you two.